SHU student shares story of organ donation

Grimm jumps for a photo after competing in her fourth Transplant Games of America, a multi-sport festival for transplant survivors. Photo courtesy of Colleen Grimm.

“They told me there was no cure for this disease. You either wait your time or get a heart transplant,” said Brittany Grimm as she began telling her story of how organ donation saved her life.

Grimm is a junior communication major at Seton Hill University. “Transplantation has opened the door for me,” she said. “I have been able to do many things, not only live my life but graduate middle school, high school and attend college.”

Grimm was nine years old when she contracted pneumonia, a lung infection that for most people is easily curable. “They gave me medicine, sent me home and I was fine,” said Grimm.

Nobody knew what was about come. When Grimm went in for her check-up, she was given chest x-rays to make sure everything was fine.

It wasn’t.

The scans showed that part of her heart was enlarged.

“The doctors at the hospital told me that I needed to get it looked at,” said Grimm. She went to see a specialist in Erie, where she was diagnosed with restrictive cardiomyopathy, a rare disease that causes the heart to stiffen, which results in restrictive blood flow.

The only cure for the rare disease is a heart transplant. “At the time I was diagnosed, I wasn’t unhealthy enough to be put on the list,” said Grimm. “I was sent home to wait until I got sicker.”

The system for the transplant waiting list was developed from the National Organ Transplant Act in 1984. The list established a national organ sharing system to guarantee fairness in the allocation of organs for transplant.

The Children’s Hospital in Pittsburgh is where Grimm traveled for many of her appointments and where she received her life-saving transplant. Children’s Hospital is the world’s premier center for pediatric transplantation. Photo courtesy of UPMC.

Requirements to be eligible for the list vary by organ, however there is a set of general criteria that guides the process. Medical urgency plays a large role in determining this; the sicker the patient, the higher they are on the list.

The United Network for Organ Sharing (UNOS) manages the transplant waiting list, ensuring that organs are getting to the patients who need it most.

According to the Donor Program, the average wait time for a transplant can last from four months (heart and lung) to five years (kidney).

Grimm would wait two years before becoming eligible for a heart transplant. When she was 11 years old, after a check-up at the Children’s Hospital in Pittsburgh, she would be told that she was sick enough to be put on list. Now she would be left with more waiting until a heart was available.

“Two weeks later I was in the basement watching a movie with my parents and I ended up collapsing,” said Grimm. “I hadn’t felt well that night, but I didn’t tell my parents because I didn’t want to worry them.”

After collapsing on the stairs, Grimm was taken to the children’s hospital where she would wait 10 days until receiving a heart.

After a patient receives a donor’s organ(s), the patient and the family of the donor are given the choice of receiving information about each other and staying in contact.

“I do not know who my donor was; all I know is that he was a 31-year-old male who died from a massive seizure,” said Grimm. “I do write his family letters every Christmas and anniversary of my heart transplant and Easter and other holidays.”

Donate Life PA is the campaign for organ donations in Pa. The campaign spreads awareness on the facts and information of donation, as well as how to become a registered donor. Visit donatelifepa.org for more information. Photo courtesy of donatelifepa.org.

“When I received my transplant I always wanted to know who the donor family was, so I said yes to it,” said Grimm. “They must have put it on hold because some people aren’t ready. I understood that and it is completely fine to me.”

Recently, the donor’s family changed their mind. This summer, Grimm will get to meet her donor’s family. “I was so excited when I received the news, and I am excited to meet them. As of now they know my name and where I am from,” said Grimm.

Today, Grimm uses her story and survival to advocate for organ donation. “I speak to high schools, colleges, health fairs and share my story and how other people can help as well,” said Grimm.

As any medical treatment, there is some opposition to organ donation. It can be difficult for some people to understand, especially to the family of the donor.

“I have to respect other people’s opinions on transplantation; people are opposed to it for their own reasons,” said Grimm.

Some people argue their religion does not approve of it. According to DonateLifePA, a majority of the religions either strongly encourage donation as a gift of charity, or leave it for the individual to decide. “I do get negative feedback, but most of the time it’s positive,” said Grimm.

“When I was in high school and my friends started getting their driver’s licenses I would say ‘so are you signed up?’” explained Grimm.

That is, signed up to be an organ donor, and the process is very easy. Applying can be done online or at a vehicle department. All you need is proof of identification. Most people choose to sign up when receiving their driver’s license, however it can be done sooner than that.

“I would always tell people to become an organ donor just because you can save up to eight lives and enhance the lives of many more with organ and tissue donation,” said Grimm.

A person can donate eight lifesaving organs: a heart, two lungs, a liver, pancreas, two kidneys and intestines. Most donors are deceased, but living donors can save lives too by donating one kidney, a lung or portions of the liver, pancreas and intestine.

Other organs and tissues can be donated to save the lives of up to 50 more. Tissue, corneas, blood and bone marrow are just some of the ways to save or enhance someone’s life.

“It is very important for me to explain to people that organ donation is important, not only because I received an organ, but also because I want to help the people who are waiting,” said Grimm.

According the to American Transplant Foundation, there are more than 120,000 in the United States on the transplant waiting list. About 22 people die everyday waiting on this list.

“It’s really crucial; I could have been one of those people. I wouldn’t have the chance of being here today if it wasn’t for my donor and I thank him every day for it.”

“I stress to people that you can become a hero, you don’t have to be a president or a superstar to impact someone’s life. You can do it just being an ordinary person, by saving someone’s life,” said Grimm. “It’s the best gift that you can ever give to someone who is waiting.”